Dawn shared her thyroid experience that provides a wonderful encapsulation of many of the issues we encounter when we try to get thyroid health re-established:
I had a TSH of 3.9 for years, and they ALL said my thyroid was fine, then tried to give me antidepressants and told me to exercise more and sleep better. It made me so mad, because I knew I wasn’t depressed and I was exercising.
I finally found a functional doctor who tested all of them. Not only did my free T3 and T4 prove that I was indeed hypothyroid, but my antibodies showed I also had Hashimoto’s thyroiditis. Hmmm, imagine that: I wasn’t depressed, I didn’t need to exercise more, and trust me I was sleeping way more than I should have been. Now my numbers are optimal and I’m feeling so much better.
We just go along with whatever our doctors tell us, even though we know something is terribly, terribly wrong. At one point, I honestly thought I was going to die (felt so bad I sometimes wished I would). It was actually you and the wonderful people here that pushed me to get answers.
What is considered “normal” TSH is not optimal. Besides that, the TSH test doesn’t really tell you the whole picture of your thyroid. Your thyroid doesn’t make TSH. The only way to know if your thyroid is optimal is by testing free t3, free t4, reverse t3 and ideally your thyroid antibodies. You still need your Free T’s checked, even if your TSH comes back in normal range. By the way, optimal TSH is completely different than the “reference” or “normal” range. Most labs consider anything under 5 within range, when optional is below 2. Huge difference.
Conventional management of low thyroid hormone status, hypothyroidism, is defined by ignorance, neglect, and indifference, much like the 3 monkeys who see no evil, hear no evil, or speak no evil. The “rules” used to diagnose hypothyroidism by your primary care doctor or endocrinologist no longer apply in an age of heightened autoimmune disease risk triggered by the genetically altered forms of gliadin protein in wheat, disruption of bowel flora by numerous environmental and dietary factors, and the growing problem of endocrine disruption from industrial compounds. Just as using a yellow plastic dial analog telephone from 1970 would be laughably out-of-date in the age of sleek, microprocessor-driven, digital smartphones, so applying the rules of the 1980s to the modern landscape of thyroid dysfunction would be equally silly–except that your health is at stake and the answers are being dispensed by someone who purports to be an expert–your doctor.
In this new age with new challenges, some of which change every year as, for instance, the chemical and agribusiness industries release literally hundreds of new, untested chemicals into the soil, groundwater, food, and commercial products, the new rules for thyroid health have not yet been written. As Dawn points out, however, it is indeed possible to make sense out of thyroid status and work towards re-establishing something close to ideal thyroid status, even after the inciting autoimmune trigger–wheat and grains–have been removed and after disruptive factors–exposure to industrial chemicals–are not fully identified or understood.
As Dawn also points out, we should never accept:
“Your thyroid is fine” without actually seeing and getting a copy of the values (that you can share with us).
“Your TSH is fine” without, once again, actually seeing the value.
TSH as the sole measure. In this new age, it cannot be taken in isolation. (Even the full panel leaves some holes due to the larger problem of endocrine disruption at the hypothalamic, pituitary, and organ/tissue level, an issue for another day.)
Complete dismissal of thyroid symptoms such as depression, fatigue, inappropriately colds hands and feet, constipation, and thinning hair.
Cookbook medicine with the recipes written 30 or 40 years ago–when your doctor was educated before many of the problems of the new age declared themselves.
I went to my doctors and am getting a blood test done. Unfortunately here in the UK they don’t test the free T3 etc. as its a tick box form that doctors have to use to order the blood test. Is the anyone in the UK who has managed to get this done? Thanks.
My doctor told me that she is going to re test me in a couple of months. If my numbers awe still out of whack, she was going to kill off my thyroid!
Here is my last test:
T4 total. 10.5
T3 Uptake. 38.8
Free Thyroxine Index. 4.1
Thyroid Stimulating Hormone. 0.789
What do you see?
I have been diagnosed with Hashimoto’s hypothyroidism. All of my levels have been checked and are all in proper range with dosage adjustment. I am 64 and have been doing Gluten free for 9 months. My symptoms are as bad as ever, I still am loosing hair, freezing all the time etc. Most worrisome is I have had a gradual weight gain despite my efforts and weigh more now than I ever have. No one can figure out why. Any recommendations?
re: … have been doing Gluten free for 9 months.
Gluten-free isn’t necessarily doing Wheat Belly (gluten is just the tip of the iceberg).
See this Wheat Free Forum article that links back to all the weight-loss stumbling blocks discussed here on Wheat Belly Blog:
WBB Links: Lost the Wheat But Didn’t Lose the Weight
my test results: TSH: 3.11; Free T3: 1.9; Free T4: 1.3 I take 150 mcg. Levothyroxine. Any suggestions?
I was on synthroid for 10 years and was always tired, had brain fog, and couldn’t lose weight. Finally 6 months ago I tried amour and had a horrible reaction to it. Severe anxiety, depression, along with a long list of other things. Since then I’ve been trying to get stabilized back on my synthroid with no luck. I just saw a new Dr that said I need to be on t3 as well. He prescribed me cytomel and had another horrible reaction with anxiety, depression, and worse brain fog. Any ideas on what I can do to feel better and help increase my t3 without meds?
Try having your iron/ferritin levels tested. Most people who have this kind of reaction is because of non-optimal levels of iron and/or ferritin which causes the thyroid hormone to pool in the blood stream and male you feel awful.
I agree with your post , and would add that in addition, adrenal fatigue can also produce those reactions when trying to switch to a natural desiccated thyroid from Synthyroid . Even trying to add cytomel to Synthyroid can do it under those conditions.
The first time I tried a NDT I was exhausted and very stressed, it gave me occasional heart palpitations and other weird symptoms. I stopped it and went to Levoxyl and a compounded slow release T3.
It was years later , when under different life conditions, the NP Thyroid (by Acella) that I started has been my miracle.
So yes, many factors can interfere with success in taking a NDT product. Kinda sad I have lost so many years (all of my 30’s and 40’s!) to hypothyroidism and not feeling and looking my best.
I have been on Armour 90 mg for several years. Do i need to have t3 and t4 checked or does Armour have that?
Menopause struck, leaving me freezing to death in a 70-degree room. All the then-current menopause info said I’d be experiencing this–cold flashes immediately prior to hot flashes–but the cold flashed weren’t just flashes! After going and having my thyroid checked, looking up my numbers, and indeed verifying that my numbers were indeed “normal”, I started combing through thyroid websites and chat rooms, arthritis websites and chat rooms (I have had rheumatoid arthritis since childhood), as well as menopause websites and chat rooms–ANY PLACE to see if I was alone in this experience.
Turns out, I was far from alone. Other women were using DLPA (500 mg.), and some had gleaned info from adrenal websites and chat rooms, and were including Tyrosine (500 mg.) along with the DLPA. I’m doing both, and never felt better–even as a child (had trouble staying warm then too).
Now I no longer need layers of fat (or clothing) to stay warm, and it’s all peeling off.
A simple screening question people can use to detect practitioners with thyroid incompetence is:
“Although it might not be indicated in my case, do you ever prescribe T3 or compounds containing T3?”
If the answer is “no”, run away screaming.
The very name of the following web site (based on the book of the same title) captures the scope of the scandal:
Using the term “thyroid” in the search dialog for the Wheat Belly Blog will serve up several more useful articles on this topic.
Excellent advice, Boundless!
I had a similar issue with my doctors but with the amount of Thyroxine I was being prescribed for years after receiving radio iodine treatment. I write about my experience here -> http://matthopkins.com/other/thankful-for-the-gp-who-looked-beyond-normal/ – but I knew that I wasn’t quite right, yet every time I had a blood test, the doctor declared me within the “normal” range.
It wasn’t until years later that a different doctor looked at my results and said that although they are within the “normal” range, they are on the low end of that spectrum and I would probably feel better if they increased my dosage. I now feel as good as new and can’t believe that I had to persevere through those years of “medically induced” hypothyroidism.
Thanks for this post and I hope anyone else who has experienced what Dawn has or who is currently receiving thyroxine replacement and doesn’t feel quite right challenges their doctor’s interpretation of “normal”
I’m with you Matt! Haven’t read your story, but it’s probably similar to mine.
RAI treatment for Graves 27 years ago. Felt like crap, thinning hair, dry skin, weight gain etc etc…Synthyroid , the Levoxyl , then cytomel and Levoxyl and on and on…generic Armour has changed my life! I have most of my hair back!
Two thing thyroid patients should know – if your skin is dry, it’s because you don’t synthesize essential fatty acids properly! Take a little evening primrose oil and watch it improve .
Also, if you had radioactive iodine, there is a good possibility abut 20 years down the road to develop hyperparathyroidism. It happened to me and the world renown parathyroid surgeon I had, told me that point blank.
Wish someone would have clued me in on this stuff back in the 80’s!
Ps: I’m a RN, clinical nutritionist and am qualified to speak on EFAs and thyroid link.
Dr. Davis – I’m so glad that cyn asked these questions. You’ve eluded to progesterone in the past and just last week I read something on it and it’s helpfulness in thyroid problems, as well as it helping with issues of over production of estrogen. I know, that’s one of those requests that could lead to another one or two columns…..sorry. And, thank you.
I just had mine tested, after I insisted…and my results were :
TSH 1.579, T4 free 1.1, and T3 Uptake 35.06, with my magnesium low at 1.1 and D3 low also. Can you explain what my thyroid numbers mean? My Dr. did the “it’s Good” with no further explanation… I also had my estrogen tested, and got these results, with no explanation either….
Est serium 13.7, Estrone 32.7 and total estrogens 45.7.
I’m 57 and menstruation stopped at age 52. I have not needed any estrogen YET… and I have had quad by-pass. ANY SUGGESTIONS? Should I look for a new Dr? lol
A new doctor, preferably a functional medicine practitioner, sounds like a big improvement over what you are getting now.
You are missing the crucial “Free T3” value, so impossible to offer an opinion, Cyn. And for a full approach to coronary health, which is off topic for this blog, see the extensive discussions about cardiovascular health in Cureality.com.
Thank You for your advice. If you are taking new patients, I would love to come see you! I’m in SE Wi, and fed up with my Doctor who blows everything off. I appreciate your time, and will def look into your cardiac group!
I have hypothyroidism and and am currently treating it with Synthroid. A very small dose. I initially was diagnosed by a doctor attuned to these same autoimmune health concerns and he measured my free t3 and t4 and confirmed my diagnosis.
I’ve been taking synthroid for 8+ years now. He never suggested eliminating wheat, though.
Are you saying that eliminating wheat from my diet could possibly eliminate my hyptothyroidism?
i have an appointment with a functional doctor tomorrow. I’m hoping for the best. I’ve been wheat, grain, starch and sugar free since Dec. 25.
No, I did not say that.
But you are, more than likely, T3 thyroid hormone deficient, since you are taking the T4.
Hi Dr. Davis,
I am on synthroid 50 mcg with these results: T4 5.6 (4.5-12.0) , Free T3 2.3 (2.0-4.4) and two tests which I don’t understand T3 uptake 37 (24-39) and Free Thyroxine index 2.1 (1.2-4.9). I read that Cytomel can cause hair loss ( I already have thinning hair) is this common? My doctor is not going to use armour or naturethroid, so if T3 is indicated this would be my option.
I also have followed your advice on iodine and raised it to 43.4 in a range of 40-92. What is optimal for iodine please?
I still have major hypo symptoms, but digestive problems are gone, and my husband’s asthma no longer bothers him :)
Thank you and God bless you,
Gee, Maryann, your biggest problem seems to be your doctor, allowing you to have the symptoms (and internal physiological damage) of inadequately treated hypothyroidism. I would get a new doctor ASAP, preferably a functional medicine practitioner.
I don’t know what those “iodine” numbers are. If they are iodine serum levels, they only reflect recent intake but not iodine status.